Raunauds : Can anyone help in at my... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raunauds

Mulhollandpoppy profile image
8 Replies

Can anyone help in at my wits end had to ring in sick today due to it snowing now people on here will understand that I work in an office and believe me they put the air conditioning on even in this weather they don't understand an have to have investigations when I'm off sick

The only way I can manage my raunauds is at home were I can control the temp and have duvets electric blankets

I just don't know which way to turn I feel like my life has been cursed can anyone help I have to work but feel I'm not being supported enough with this illness I'm told because I have a heater at work I should be in which is not one of ur the small ones that don't kick out enough heat if I have a day off I've lost a day's pay and then punished again by having investigations

I've been crying this morning it's getting me so down can anyone give me any advice on employers

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Mulhollandpoppy profile image
Mulhollandpoppy
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8 Replies
PaleIndian2 profile image
PaleIndian2

Are you a member of a trade union, if so, have a word with them and see what can be done. I was a secretary and had the same problems as you, no matter how often other people used to complain about the air con, all they would say that it was set at 23 degrees but it was still so cold, it was very often that I sat and worked in my coat, hat and gloves. I also took out individual membership of a trade union but didn't actually need them as I took early retirement. If you are much younger something might be able to be done for you, also have a word with your gp or rheumatologist and see if they can write a letter for you explaining that you need to be in a constant heat.

Mulhollandpoppy profile image
Mulhollandpoppy in reply to PaleIndian2

Thanks for responding Im 30 I've been told because I have a heater I should be in works it's been snowing to work I had to take the day off my feet were killing me then when I go back I have an investigation for absence I just don't know what to do the doctor gave me nifidpine which give me terrible headaches I'm still waiting for a my referral with rheumatologist

PaleIndian2 profile image
PaleIndian2 in reply to Mulhollandpoppy

Go back to your gp and see if you can get your referral rushed through. Where is your heater situated? One of the jobs I had during the autumn and spring before they put the heating on and then switched it off I had a small fan heater which I could tuck under my desk and had it blowing warm on my feet, this certainly helped me. I do feel for you because we are in the minority where heating in work places is concerned and unless anyone has suffered from raynauds they don't actually know how it affects us. I am sitting at the moment in front of a real fire but I still have about 3 layers on including a padded house coat and I also have a fleece blanket I sit under if I feel chilly. Good luck.

Mulhollandpoppy profile image
Mulhollandpoppy in reply to PaleIndian2

I felt so alone before coming on here I wish I could give it to my employers for a month so they know and understands what It feels like most night when coming home from work I'm laid under a feathedown duvet and heated blanket with my heating on hate winter I feel like I could hibernate all I want to do it lay under the duvet and sleep

The heater I've got is not much use its like a tinny type radiator that gets hot from the top but you only feel it if your stood up over it

GlasgowHen profile image
GlasgowHen

It is miserable isn't it? Have you tried the foot warmers that stick to your socks but are thin enough not to know you have them on even with shoes on? They give off 8 hours of heat and although not a miracle cure may take the edge off the pain a bit.

I was told by my occupational health dept that Raynauds is covered under the equality act so you shouldn't be disciplined for absences related to it but I'm by no means an expert but might be worth looking into.

Mulhollandpoppy profile image
Mulhollandpoppy in reply to GlasgowHen

To be honest I thought it would be I still think it's more than just raunauds I'm exhausted all the time and when I'm cold it takes forever to get warmed back through u feel like I'm frozen to the bone

creditcrunchie profile image
creditcrunchie

Unfortunately there is often no empathy towards Raynauds sufferers. It's mostly a case of D I Y to find an answer. I see you are not tolerating nifedipine and wondered if you were using the slow release 60mg, I take one tablet at bedtime and headaches are no longer a problem. Have you considered asking for illoprost infusions? I found that by leaving this treatment until December it has helped during this cold spell. Could you get an electric throw, if you got it PAC tested then it would conform to legal requirements. Is your desk directly near one of air conditioning units? I find it hilarious that members of my team are menopausal so stripping off in the a.c. and by contrast I look like an Eskimo with fur boots, wool hats and scarves, often my coat. Good luck and I hope you can get some success with the company you work for.

Mulhollandpoppy profile image
Mulhollandpoppy in reply to creditcrunchie

Hi thanks for responding I have a heater and and gloves and a heated body warmer however when the weather is bad like now ans the heating is not working I don't stand a chance the doc had only given me a low dose to start me off 5 mg 3 times a day I might try them again wot is are the illoprast infusions

When it's snowing the best way I can control my raunauds is in bed on my electric blanket feather duvet and full control of the heating temp office can be a nightmare you will have someone who gets hot and turn all the cold blowers on can't win I still need to find out whether I have sec or primary raunauds

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